[Mjg13]

Last year I was dx d with crps II after rib resection. My rsd is right hand arm breast neck and right upper back. This January I had a multi level thoracic laminectomies to remove a tumor. My pain, almost 3 months later is through the roof. I can't touch the skin in the middle of my back, firm pressure is tolerable but the slightest touch sends me through the roof. My back burns from the middle down my back and rear. My right leg and foot intermittently burns. I am super stiff and have a hard time initiating walking. My hips are killing me. I have a hard time bending as well. I hate going to bed because I can't sleep and I feel like I'm getting worse everyday. My surgery was extensive to what I was told, I went without pain meds twice for over an hour and admitted to icu for pain control. I'm wondering if this thing spread or I'm week from surgery? I thought I'd be getting better instead of worse just like my first surgery. I haven't noticed any swelling or color changes like my arm and hand. My ankle is but I only notice because my sock line is always there. My right foot feels colder but to touch seems the same. I have no help here and I'm about to lose my insurance unless I return to work. Bad situation. Any ideas? Anyone have rsd in their back? Thanks.

[catra121]

I have RSD in my back...whole upper body in fact between my waist and neck (including both hands and arms) and this was all spread that happened after I got a lumbar sympathetic block (to treat the RSD in my ankle...go figure). So it is definitely possible that surgery could cause spread. The RSD in my spread areas feels the same as in my ankle (allydonia, burning pain, etc) and is triggered by the same things as my ankle. But some of the other symptoms were a little different than what I experienced in my ankle (where the RSD first started). My foot tends to turn dark red/purple...but my upper body just gets slightly red like a slight sunburn (wasn't outside at all to get one and was certainly always covered up so wouldn't get burned in that whole area anyway). I also haven't had as severe or as often the temp changes...but I think part of that is because I have been treating it properly from the start (no ice, desensitization, etc) where as with my ankle they had me immobilizing and using ice from the beginning until I got the dx of RSD 6 months later. So even though it FEELS the same in a lot of ways...some of the symptoms have presented a little differently in my spread areas.

So...it is possible that this is spread of your CRPS. Have the doctors been able to give you any help at all...do they have any theories or are they stumped? Couple of things that I would recommend.

1. Keep moving. I know it hurts and is hard but the more you give in to not moving, the worse the pain will get, then you will move even less, and the pain will get even worse, and so on. With your feet and legs, even things as simple as heel and toe raises while sitting or drawing the alphabet with your foot or toe crunches while you are sitting can be a good place to start to just keep yourself moving. The more you immobilize, the worse some of the other symptoms will get.

2. For sensitivity to touch...try to do some desensitization. I would take something like cotton balls or light fabric or whatever and rub it on my RSD areas. It will hurt...ALOT...but over time you will notice that you have less and less severe reactions to it and the sensations with start to normalize. It's hard with the back...I had my boyfriend help sometimes and a lot of the time it was me trying to wear more normal clothes. First I could only wear a normal shirt for 5 minutes...then it was 10...then 20, etc until I was to the point I am now where I can't wear tight things but I can wear regular clothing most of the time.

3. Warm baths with epsom salts can be really great. They help me a lot and I have started to do them twice a day and its amazing how much a difference that can make in helping to soothe the pain when not a lot of other things do. It doesn't go away but it does take the edge off. And when you have it in your back that can be a pretty difficult place to get relief.

4. I highly recommend trying out tDCS. For about $300 investment you can try this treatment at home...it is not invasive and has no real side effects. I have only been using it for about 3 weeks now and I have already noticed some improvements in the pain and function. There is a long thread on here about it...definitely check it out.

If you have any other questions...this is a great place to ask them. EVen if you just need to vent...everyone here understands and is very supportive. Take care and good luck.

[Mjg13]

I can't even thank you enough for sharing. Like the beginning of when I was first diagnosed my mind is getting the best of me right now and I feel crazy. I'll look into your suggestion for sure. As far as docs, I can't see my regular doc because if she knew how bad I was she would refuse to let me go back to work in 3 weeks, I had to beg her last time. I see the neurosurgeon next week but the only I can get from them is physical therapy which I'll take. I had stellate blocks in my neck that didn't take and there isn't much help where I live. I do move as I lost the use of my hand the first time by guarding it and experienced the hell getting it to move again when I discovered I HAD to use it. Desynthesying, no way. I worked up to wearing a bra and can tolerate firm pressure but forget purposely trying to brush against my skin. I noticed I have a sunburn appearance too but played it off and it's interesting to me that you mentioned the same. I know I'm in a grieving process right now. Pain pills help but I'm not supposed to work on them so I've been trying not to take them, then I do and beat myself up for it. Vicious cycle. I believe I'm fighting myself in hopes the old me will return and to afraid to give in to the idea this is going to stick around. I function with the original rsd sight and learned ways to help it, but I have no idea how I'm going to fake it at work this time. Then all the worries, what if s of if I lose my benefits, job? That scares the hell out me. I'm so sad. I was a backpacker, I ran, I took care of people for a living and love it and now? Fighting not to become a burden to my husband. Fighting not to lose all of me. Thank you again I'll check the link.

[catra121]

I was/am a very active person too. The past year has been a nightmare for me being stuck in a wheelchair for most of it and unable to leave the house one my own for the rest of it. I finally have some freedom back now with the walker and have been able to improve my endurance and strength enough to go out for stretches of time.

I'm not sure where you work (big company, small, etc)...but you do have a permanent disability. Have you considered asking for accommodations for your disability? You would qualify under the ADA I think (unless your employer is very very small) and one thing that has been considered a reasonable accommodation is unpaid leave unless they can show that it would cause the business undue hardship to grant it. At the very least, they are legally obligated to engage with you in an active discussion about what sorts of accommodations they might be able to make. Maybe there would be some adjustments they could make to the work environment or the WAY you do your job that could make it easier for you (like additional breaks or whatever). Not knowing what you do it's hard to come up with something more specific to your situation...but there are lots of things that you are entitled to under the ADA that lots of people don't know much about. But you have to ask for the accommodations...at least start the dialogue...and that may provide you some relief in stress and worry about your insurance and stuff. Unpaid leave wouldn't help financially...but it would protect your job and your benefits while you undergo necessary treatment so you can focus on your health. We all know how stress can make things even worse for us so even taking that one burden off your mind could be really good for you.

[alt1268]

I dont have back rsd. But wanted to say that I am sorry for the pain you are going through. It definitley sounds like your meds aren't doing it for you.

[Mjg13]

Thank you both. I work in a hospital as a respiratory therapist. My job is physically and mentally challenging and they have a specific list of job duties I must be capable of performing. (including 12+ hour shifts) I'm scared to go to hr because it will raise flags and I don't want to be seen as a liability at risk of losing my job. I would be able to find another job here. I'm quite uninformed about my rights and not sure who to talk to. I was out 9 months dealing first surgery, went back for a few before the tumor was removed. Now I'm coming up to the 3rd month mark of being off and my insurance, which is now 100% coverage, is being threatened if I don't return. I got away with avoiding certain things last time, ie chest compressions and intubating, but now I barely move without extreme pain let alone sleep. As far as meds go, if I took Percocet on a regular basis it would help but how can I work on narcotics? neurotin made me hallucinate, cymbalta was ok, but no real changes, ldn put me in muscle contractions, nerve blocks didn't take haha. I don't know I'm so stressed. Bottom line, I will return to work and do the best I can until challenged by my behavior. Top priority will be perfect care to my patients which will mean slowing down so I'm able to think appropriately and not miss something that can be the difference between life and death. Do either of you what type of attorney can give info regarding work rights? I'm really not ready to give in to the idea of fighting for disability.

[alt1268]

I am on 2 patches butrans and clonidine both help me and don't give me that yoyo feeling of percocet. I am off the neurontin and feel like my head is clearing. I use to work as a nurse, but when I crushed my foot I could no longer do the 12 hours. Then I got put on a roll a bout and they would not let me come in to work doing light duty because of the liability. I can not stress enough that you need to be careful. Not only for you but for your patients.

[catra121]

I completely understand your feelings and it is definitely a tough spot to be in. Every person in this type of situation needs to make the decision that they feel is best for them (and it will not be the same for everyone). I will give you some of my opinions on the situation and hope that they can help you see the situation in a different way through the eyes of someone not as personally involved.

First off...I would not get a lawyer involved at this point and hopefully you will never have to. If you educate yourself about your rights so that you are not taken advatage of then it may never be necessary to get a lawyer involved. It's always important to get the advice of someone you trust before you do anything (I talk with my dad a lot as he has worked on the HR side at a business and has had lots of experience with different situations). But generally...if you start off with a lawyer then your employer will get their backs up and see it as confrontational. It's your right to get one if you want...but if you can resolve the situation without getting confrontational then that will be the best way to handle it. But, as I said, you do not want to let them take advantage of you either so you should read through the Americans with Disabilities Act and also look up some examples of reasonable accommodations.

Like I said before...I think your best bet would be to contact HR and officially request unpaid leave so you can get the treatment you need for your disability. In your situation I think it would be unlikely to be a hardship on them to allow this since you have already been off for periods of time. Talk with your doctor, realistically, about how much time you need to get the treatments you need so you can get yourself to a point where you can go back to work and then get a letter from them saying you need this time off. Get this to HR, along with your request for the unpaid time off, and that will be a starting point. I personally think you will be less of a liability to them if you wait to come back until you are really able to...especially in a field where mistakes could have life threatening consequences.

This should open up communication between you and your employer about accommodations. Hopefully they would be able to accommodate the unpaid leave and then you would keep your benefits and could focus all your energy on getting yourself better so that you can return to work. If they cannot accommodate that, however, you can talk about other options. Maybe, while you are undergoing treatment they could move you into another temporary position that would be less physically demanding (less hours, less physical activity, etc) or maybe they could accommodate scheduling things like if you have to work a long day that you are off the day after to recover. Or maybe you work the long day but you have to get breaks at certain intervals for certain periods of time where you could give yourself treatments (like heat, physical therapy exercises, meditation, TENS, ultrasound...whatever helps you). These are just some of the different things that they might be able to accommodate if unpaid leave is not an option. But the bottom line is that if you have a permanent disability, they are required to provide you with accommodations that will not cause an undue hardship on the business.

If you decide to go back to work and need accommodations, think really hard about the things you can and cannot do and also the things that will make it easier for you. It generally doesn't help if you go in and tell them what tasks or specific jobs you can or cannot do. It is more helpful for you to say explain what you NEED to do your job as opposed to focusing on what you can't do. Does that make sense? Something like: I need to do heat therapy treatment for 30 minutes every 4 hours is more helpful than just saying I can't be on my feet for more than 4 hours at a time because it is more specific about what you need to do the job rather than just what you can't do.

When dealing with HR you can sometimes end up working with someone who will really try to work with you and can come up with ideas that maybe you yourself would never have thought were an option. OR...you can sometimes end up working with someone who will try to make you absolutely miserable and push to the absolute edge of whatever restrictions you have to make you miserable. That's part of the reason why you should focus on your needs rather than on what you can't do. If they provide you with things that will ALLOW you to do your job then you are better off. If you say you can't do a certain task then they will put you in the worst job they can think of that falls in that category. Not saying this happens every time (I said some people are helpful and not this way) but there are too many of the latter who try to make you miserable that it would be foolish not to try to minimize that possibility as much as possible. It's better for you and better for them if you really think these things through with the focus on being able to do the job rather than not being able to do the job. Even when you get one of the good ones you can find yourself in a difficult situation if you just focus on the things you cannot do.

But legally...they cannot just say no to anything you ask for or fire you because you need an accommodation for your disability. Unpaid leave is very reasonable in most situations. At the very least...they are legally obligated to work with you to try to come to a reasonable solution with regards to accomodations. If they cannot provide something then they have to let you know WHY. And if you accept a different accommodation then it has to be just as effective for you as the one you requested. If you partner together you can figure this out.

But what you really really should not do (in my opinion) is just not say anything and put yourself in a worse situation. You have to make them aware of your disability and request any accommodations that will make this situation better for you. They cannot fire you for your disability and if you work together you will most likely be able to come up with something that will work for both sides. Don't let them bully you, but do your best to work with them instead of against them in this process. And trust me...I KNOW how it is when you love your job and don't want to make waves or cause problems. The trouble is...this almost always ends with you in a bigger mess and them getting away with something in the future. Legally they cannot discrimminate against you for your disability but that doesn't stop them from seeing you as a liability if you go back before you are really ready and they will find some valid reason to let you go. Protect yourself and your rights by just following the appropriate steps and working with HR regarding the accommodations you need.

I'm by no means an expert but being in a similar situation (only one that has gotten worse and to the point of me needing to file a charge of discrimmination with the EEOC) I have done a lot of research on this. There are a lot of people who wait too long and then they no longer have the option of going to the EEOC or just assume that even though things are unfair that there is nothing they can do...and that's just not right. Hind sight is always 20/20 and you don't want to end up years later wishing you had done things differently just because you were afraid to rock the boat. Protect your health, try to protect your benefits and your job, etc by doing the right things now.

I hope some of that is helpful to you...or at least that you have a better understanding of what your rights are under the ADA. Check out the EEOC website at www.eeoc.gov. Like I said...every situation is different and what is right for one person is not right for another...you just need to think it all through and make whatever decision is best for you and your family. Don't make the decision that you think is best for your employer...that never ends well when you put their needs and desires above your own in these sorts of situations. Take care and good luck. Remember that your health is not something so easily replaced. Even if you were to lose your job...a job can be replaced. But if you lose your health...that is not so easy.

Oh...and one more thing. If you can work...or strongly believe that with treatment and recovery that you will be able to go back to work and the need to not work is only temporary then I wouldn't start any sort of social security disability proceedings. We all may end up there one day but until you reach the point where you CANNOT work and it is no longer temporary then you should not apply for disability. I'm sure others might not agree...but that's how I feel about it.

[Mjg13]

Thank you again, I know you put a lot of time into writing me and I'm greatful. I'll clarify a few things only because we don't know each other. I was asking about an attorney because I'm in a "what iff" stage. Like you, I want to be informed just in case. I thought an attorney could give me thE info I needed to understand what I can and can't do, not bring on a case. I read the Ada section regarding health care workers and it would be easy for a huge company to find ways around that if they wanted too, legally. It's reality unfortunately. When my pain is controlled to a certain degree I can function and that's why I would fight to go back to work, I would NEVER put myself or anyone at risk and that is why I'm seeking info now, because what if I do become unable. Thats the sole purpose of my writing. Uncertainty is scary. Knowledge for me is way to feel in control of something even though I know better. What will be, will be. I cannot afford not having sdi or insurance, that s a nasty place i dont want to be. I have limited care now, but would have nothing then. Being afraid of speaking to my employer is real because I am immediately replaceable. There is a waiting list of over 150 applicants currently waiting to do what I do. Simply put, I am seeking info which some of you graciously gave and it is so appreciated. Thank you all again. I will be seeing my pain doc to consider a trial of an external patch rather than oral meds and of course physical therapy. Once I get back to work ill feel human again which eases rsd pain as I found out before. If I can't I'll accept it, I'll speak with my employer with the help of my doc and seek some other type of job more suitable to my condition. Thank you again for spending your time for me, means the world.

[catra121]

I completely understand and sympathize with everything that you said. It is just a crummy situation to be in and if I were not going through something similar myself I would not know nearly as much about it. All I want is to go back to work and get that sense of normalcy back in my life...but my employer is being difficult and not letting me back even though I have been released back. They haven't fired me either...so it's a very strange situation all around. But I have done everything on my end that I can do (including filing a charge of discrimination with the EEOC) and that's about all I can do. Now I am going to look for a new job..but with the walker I can't imagine it will be an easy thing. I know "legally" a place cannot not hire because of a disability...but in the real world they find ways around it. I did not want to be antagonistic with my employer and I don't think I was at any point...I gave them more than enough chances to do the right thing. But such is life and there's only so much we can control right?